Every 10 minutes, another person is added to an organ donor transplant list.
According to Organdonor.gov, that means more than 104,000 Americans are currently on the overall organ donor transplant waiting list. Sadly, 17 people die each day while awaiting a transplant. But for the most needed form of organ donation is for patients with kidney disease. As of January, well over 88,000 people are awaiting kidney transplants.
On March 27, Sanjana Ohri, a 24-year-old St. Charles County woman with cognitive and speech delays, was added to that list – and her mother, Pooja, a Fort Zumwalt School District teacher, stepped up her efforts to find her one.
Sanjana’s kidney concerns were discovered by accident in 2009.
“From the time they’re kids, we told our children to go to the bathroom, flush the toilet, wash their hands and come out, and that’s what Sanjana usually did,” Pooja said. “For some reason in 2009, she left without flushing, and when my mother (who was visiting from India) went to use the bathroom, she noticed that (Sanjana’s) pee was frothy, or bubbling, as if someone had opened a beer can.”
For awhile, Pooja said they didn’t give it a second thought. But after her parents left, they went to the doctor for Sanjana’s regular checkup and her doctor took a urine sample. That’s how her parents learned that Sanjana had too much protein in her system. They were directed to a nephrologist at SSM Health Cardinal Glennon Children’s Hospital.
“The first thing he said was, ‘Your daughter will need a kidney transplant.’ I asked, ‘What’s the prognosis?’ He repeated, ‘Your daughter will need a kidney transplant.’ There was no sugar coating. I left the office wanting to find another doctor. We found one at St. Louis Children’s Hospital who said Sanjana would eventually need a kidney transplant.”
Sanjana’s biopsy showed she had focal segmental glomerulosclerosis (FSGS). Pooja stopped buying her processed food. Instead, she cooked everything from scratch and added an exercise regimen to prolong Sanjana’s kidney function. But now, Sanjana’s reaching renal failure with functions down to the 20% mark, which is how she landed on the transplant list.
It’s up to doctors to add patients into the Organ Procurement and Transplantation Network (OPTN). It’s a national computer system that puts patients in order on the waiting list and matches them to donors. Pooja said being disabled doesn’t move you to the front of the list. In Missouri, the wait for a deceased kidney donor is about three to seven years.
According to the Transplant Center at Barnes-Jewish Hospital, many people who need a kidney transplant discover they have a friend or family member willing to donate. When a suitable living donor match is identified, the recipient could have transplant surgery in as quickly as 12 weeks.
Pooja wanted to give Sanjana a kidney, but she was diagnosed with appendicular cancer four years ago. Sanjana would have had trouble fighting cancer cells. Pooja’s husband, Sanjeev, is pre-diabetic. So, he also wouldn’t be a good fit for kidney donation.
The family decided that they needed to get creative.
“We decided to put up a Facebook page for her so we could spread the word that we’re looking for a living donor,” Pooja said. “But when you have no friends, no occupation and a very limited circle, who comes forward? You start relying on strangers.”
The hope is that someone will see the Facebook page and request being a donor for Sanjana specifically. Even if someone steps up who is not a perfect match for Sanjana there is hope through Barnes-Jewish Hospital’s paired-donor kidney transplant exchange program.
According to the hospital’s website, in a kidney exchange, as in other living kidney donor transplants, a donor gives a kidney and a patient receives a transplant. The only difference is that the donor gives to a different person than he or she may have originally expected to help. That person, say Sanjana, would then receive a living kidney from a different donor that meets her match criteria, while the donor who didn’t match the criteria for Sanjana is able to donate their kidney to someone who is a match. The Barnes-Jewish program can pair living kidney donors with patients in the St. Louis region as well as across the country.
A person’s blood type is a key factor in identifying a potential donor. Sanjana’s blood type is B-positive. According to the OPTN website, people with blood type B often wait longer for a kidney than people with other blood types; it’s harder to find a donor with type B blood. It’s a popular type in the region for both potential donors and those needing transplants.
Pooja is hopeful that with increased awareness Sanjana and others like her will find their living match.
She also wants people to consider being an organ donor upon death. It’s estimated that every deceased donor can save eight lives and enhance over 75 more. But that said, for donations after life, only three in 1,000 people actually become donors even though 169 million are registered, because the manner of death does not allow for continued viability of the organs meant for donation.
Awareness of the need is critical, Pooja said.
National Kidney Month takes place each March but unlike the constant reminders of Breast Cancer Awareness Month in October or American Heart Month in February, there is virtually no mention of transplant waiting lists or kidney disease during March. The silence is madness for those affected but not surprising.
After all, kidney disease is known as a “silent disease.” That’s because typically there are no symptoms in its early stages, and 90% of those who have chronic kidney disease don’t know they do until it’s highly advanced.
Risk factors, besides being over age 60, include high blood pressure, diabetes or heart disease.
Urine tests and blood tests are good checks for major kidney issues. But in general, the best ways to help keep one’s kidneys healthy are having a diet that includes fresh fruits, vegetables, whole grains and low-fat or fat-free products. The consumption of sugar and salt also should be limited. Taking one’s prescribed medicines, limiting alcohol intake and stopping smoking is also important.
Maintaining a healthy weight, being physically active at least 30 minutes a day, finding stress-reducing activities and getting at least 7-8 hours of sleep per night is generally helpful for overall health. So is asking good questions and seeking routine screening from your healthcare provider.
Like any mom, Pooja wants to do all that she can to help her daughter live a happy and healthy life. To learn about being a potential donor, call (314) 362-5365 and choose Option 4, “Sanjana Ohri” code: 7050.